Hearing from Those Who Suffer Mostly in Silence

“There have been some medical schools in which somewhere along the assembly line, a faculty member has informed the students, not so much by what he said but by what he did, that there is an intimate relation between curing and caring.”

So remarked Ashley Montague, the British-American anthropologist and humanist.

The millions who suffer from what is termed Chronic Fatigue Syndrome in the United States, and Myalgic Encephalomyelitis in the rest of the world, await day that the medical establishment cares enough about the disease to cure it.

They await that day with an anxiousness that is unimaginable to those who have not been afflicted by the disease.

The two commentaries on CFS/ME that Llewellyn King wrote for the Hearst-New York Times Syndicate (and posted on this Web site) have elicited a terrible cry from the afflicted, including a woman who called herself “an unburied corpse.”

These cries called out for a special edition of “White House Chronicle” on CFS. That edition, featuring Deborah Waroff, a New York author, and Dr. Paul Plotz, a National Institutes of Health clinician scientist, first aired on television Oct. 8, 2010.

“I hope the television special and my syndicated columns push the National Institutes of Health and the Centers for Disease Control, and its political masters, to take action on this life-robbing disease,” said King, executive producer and host of “White House Chronicle.”

Here are some of the viewer responses to the CFS/ME special that we have received so far:

From: Terry

Thank you so much for your broadcast featuring ME/CFS.

I am a Canadian ME/CFS patient who has suffered from this disease for over 12 years. I am involved in research looking to see if there is a connection between the newly discovered XMRV retrovirus and neuropsychiatric disease in my child. The thought is XMRV may have been passed onto my child by me and played a role in expression of her condition.

I am waiting for general XMRV research to learn if the retrovirus played a role in cancer I was diagnosed with four years ago as well. I am wondering if I will develop other cancers and wait anxiously to learn more about ME/CFS and cancer.

I would like to state here, in my experience, CFS/ME is not biologically benign, and highlighting CFS/ME on your show is significant. Perhaps you may help move research forward and thank you in advance for this.

I am immensely appreciative, since as you can imagine, I am anxious for research to help my family understand our poor state of health.

I am a most grateful U.S. neighbor.

From: Melinda

I can’t thank you enough for the attention you have brought to ME/CFS suffers.

I have had to deal many times with the ignorance and intolerance towards this illness. It is such an isolating illness and it is well and truly about time that more attention is given to it.

It would be so much easier to deal with if we had understanding and support.

Again thank you!

From: Cheryl

Thank you so very much for your willingness and openness to bring new light to ME/CFS on your show.

We need you. We are desperate to have our voices heard. I can only tell you from my experience that no one would want to have this horrible, life-stealing illness.

I was a very active social worker and church and community volunteer before contracting a virus in 2004 that never went away. It took so long to get an accurate diagnosis that by the time that I did, I was completely bedbound, not being able to leave my home for weeks at a time.

I have to travel over 1,000 miles for medical care, since I am unable to find a doctor here that believes me.

In January of this year, I had to crawl out of my bed to fight breast cancer. With a compromised immune system, I worry about it coming back and not being strong enough for more treatments.

Cancer was a breeze compared to the battles of ME/CFS–and I do not say that flippantly.

Please continue to bring this horrible illness and the injustices to the public. It is a crime against humanity to be made to suffer like this with no answers.

God bless you, Mr. King.

From: Karen

How is “epidemic” defined at the White House?

When is National XMRV Testing Day?

How much longer do you think I can hold out before Chronic Fatigue Syndrome induced dysautonomia shuts down a vital central nervous system?

Comments

Thank you so much Ms. Gasparello for posting these letters. Funding, serious research and validation of our suffering are at the top of my list for sure. I appreciate all you and Mr. King have done for us.

Thank you, Cheryl, for telling it like it is. Cancer is treated like the worst disease possible, yet I know several cancer patients who were able to keep working through chemo; I lost my job because of my symptoms. I know many people who’ve been cured of cancer. Dr. Peterson’s response to the question of how many CFS patients were cured was “None.”

I have been sicker, longer, than any of my relatives with cancer. They had a few rough months; I’ve been down for an entire decade — a fair amount of it entirely bedridden. Yet they get the sympathy and all I get is verbal abuse.

Dear Ms. Gasparello,
Thank you for the article and for your help as well. I’m am your newest cheerleader!
My dreams are simple. I just want to be able to take my dogs for a walk around my block on my own two legs instead of using a handicapped scooter. I want to be able to feel like a wife again instead of a care receiver. My husband would love to have his wife back. Will we ever get these things?
We have to look to the private sector like the Whittemore Peterson Institute because our government has failed us.
Thak you again for keeping this alive in the press. Please keep it up!!
God Bless You,
Cheryl Marshall

xmrv does not cause cfs… dr. garth nicolson found 45% of the hiv aids virus envelope with pieces of pathogens inserted inside over 10 years ago… he has no doubt that this was man made in a u.s. lab… gulf war syndrome is c.f.s./m.e. and you can ask george bush sr. about his selling to suddam who use to be his no.1 allie in the middle east and these were to be used against the iranians during the 10 year desert war…this is the main reason why america went to war to retrieve his fathers illegal weapons… suddam is dead now which shuts him up but he already warned the world, ” come to iraq and there will be a surprise” he unleashed these pathogens on allied forces and it is to late because now it will infect more than 17 million and will surpass aids… if you want truth get in touch with garth and nancy nicolson not the n.i.h./c.d.c./f.d.a. what should happen now is all from the cdc/nih should be fired and locked up and put the truth ‘nicolson’s’ in… it better be stopped or we can all kiss our asses good-bye… god bless and be well sincerely aidan walsh southampton, u.k.

Thank you so much for once again covering the ME/CFS story.
It is seldom our voices are heard, with most having tragic stories to tell. We need to get the awareness out there and start being treated like the human beings we are.
We need funding from governments and good medical research such as the WPI is doing.
How long do we have to wait?
It’s been decades already, please let it be our time now.

Thank you Mr King for your continuing coverage of this illness! It has been such an uphill battle for care by those with CFS/ME. Not only must one fight the disease itself, but also insurance companies and even parts of the government and the medical community. It is worse in the UK, where a small group of psychiatrists have somewhat successfully, but inappropriately, forced CFS/ME into the “mental health” category — thus subjecting people with CFS/ME into “treatments” (eg GET – “Graded Exercise Therapy”) which in fact harms the patient.

Sadly, the UK psychiatric lobby has influenced CFS/ME care worldwide; in the US, people with CFS/ME have been dropped from LTD (Long Term Disability) based on their miscategorization as being just lazy.

Please keep up your great reportage, Mr King! You give one hope that this deception will soon be a thing of the past, that serious research into the physiological causes of CFS/ME will proceed apace!

Not enough can be said about your sympathy and willingness to do this episode, especially with NIH represented. Long ago, Hillary Johnson (Osler’s Web author) and others managed to make Nightline with Sam Donaldson. While it had no impact on the CDC’s behavior, perhaps having a broadcast accessible 24/7 worldwide is a different story, and it is crucial as NIH/CDC continue their posturing.

This is the first time that American broadcast media has publicly discussed the British-American psychiatric connection – except for the May ’08 CFS Advisory Committee meeting, where CDC’s Dr. Reeves freely admitted the collaboration himself. It was actually the first CFSAC meeting ever broadcast and video-archived (see the DHHS website). The RealPlayer video and PDF transcript show that Ms. Waroff is dead on about the CDC redefining it’s own definition to fit a psychiatric entity – to the point that there is a CFS “III” which CDC diagnosed by phone. In this way, CDC can perversly argue that CFS is not ME, or anything with an organic infectious cause.

Dr. Plotz was incorrect on a couple of points. First, patients know the late Dr. Strauss stopped being their ally when his EBV study proved negative and he switched his assessment to psychiatric. As Osler’s describes, from his NIH post, Strauss’ word held great sway that helped smash efforts to give CFS the attention it needed. Second, as you’ve likely read, there has been plenty of data with measurable abnormalities, starting with what CDC ignored from Tahoe; here again, the message long presented by public authorities to research and clinical physicians has been false. Many of those would indeed fall under Plotz’ area of rheumatology, but others are outside as CFS is so systemic. I also differ with his feeling that whether XMRV pans out as causal, the interest is here to stay. Outside the Whittemore-Peterson Institute and a few other private practices, interest in CFS will follow the money, further steered by mainstream acceptance or skepticism. Other viral causes have been entertained and shot down. And while a retrovirus finding does have professional and monetary allure, working the bigger picture and undoing the havoc in our bodies is a whole other issue.

Along with the healthier kind of skepticism Plotz described, significant effort is nevertheless being exerted to stall progress with CFS, chronic Lyme, and Gulf War Illness – all within the same symptom spectrum. This is while the CDC admits Lyme to be on a surge, CFS cases keep appearing in children and adults, and a quarter of U.S. and U.K. 1991 vets remain disabled. There are probably parties with their own separate motives, but a common suppressor would not surprise many of us. While Dr. Reeves’ interest in the military is described on the Osler’s Web site, the U.K’s Simon Wesseley (ally of Peter White, mentioned by Reeves in the CFSAC transcript) has been a principal player in that country’s GWI assessments. One of our hero-physicians, Nancy Klimas, has also been involved with GWI research, and has begged even CFS patients to help her fund her veteran studies to completion. Of interest as well, perhaps, is the pedigree of Dr. Lo, co-author of the recent NIH-FDA XMRV study. In a sense, Klimas’ wish that the DoD become more involved in CFS research has come true – to what end remains to be seen. For NIH-FDA did not precisely replicate WPI’s XMRV study techniques, which they could have, but took a broader approach and found something else, which either weakens or strengthens the XMRV case, depending who’s talking. I too prefer facts to suspicions; I just hope I’m still around to learn them.

One final note: as the Lyme community had it’s near-Oscar nominee, Under My Skin, a film on CFS/ME is also in the works, and carries viewpoints from important figures on both sides of the pond. See http://www.whataboutme.biz/news.html. This story only gets sicker – but it’s costing lives, and that’s why your broadcast was so important. Thank you.

I was so touched by your segment on CFS. I could see the genuine pain, concern, and care from Llewellyn King and Deborah Waroff. I know the look in her eyes so very well. I too have suffered from this horrible syndrome going on 8 years. For me, it was an extreme and acute case for which I have never recovered. Before my disease I was in the prime of my career as a veterinarian, a dreamed I had realized since being 10 years old. I was also a talented and accomplished climber and runner. I gave back to the community by actively volunteering in multiple worth while non-profits. Now I barely get by on a daily basis and continue on a downward spiral. I am fortunate to have a supportive family and friends, more than many have with this disease. Still it is all I can do to allow myself to stay on this planet and hope to see a future for me once again.

I have a beautiful, amazing young daughter and became ill almost immediately after having her. She has had to watch me suffer while keeping a smile always on her face. What does she have to look forward to for her health in the future?

I thank you from the bottom of my heart for bringing this to light and hope we continue to move forward.

As someone who was struck down with ME/CFS aged 16, never managed to leave home and over a decade later (now aged 28) remains housebound and dependent on my parents for my basic care I am VERY GRATEFUL for your recent coverage of ME/CFS.

We patients have not only been fighting this dreaded disease we have also had to fight governments and the medical establishment receiving abuse at their hands. We’ve campaigned for decades and got precisely nowhere, we are still not considered important enough to be worthy of peoples time.

I really hope the tide is finally turning but there have been many false dawns for ME/CFS and we are no longer naive enough to expect anything from any government.

Such accurate coverage of our story is unprecedented and very much welcomed. Thank you for taking the time to understand us and tell the world the reality of ME/CFS. The world needs more people like yourselves.

Just want to get added to the list….I got a bad flu in 1986 and I have never been well again. Twenty five years home alone sick. And as bad as that’s been, the total lack of acknowledgement is right up at the top of the list. Good news that this illness, whatever it is finally is named, if finally getting a little attention. I’m sure it’s a retrovirus.

I have not seen your broadcast. Only heard about it. I also want to thank you and I pray that the right people were listening. I have been dx with both CFS and fibromyalgia. I no longer have a life. Now I have to justify myself to what friends I have left that Im not just a lazy slob.
Please get us some help

White House Chronicle on Social

There is disquiet in the soul of America. It has been expressed night after night on the streets of more than 100 towns and cities. That number of urban sites, with all those tens of thousands of people, are a cry from the hurting heart of America — yes, over the death of George Floyd, […]

A plow breaks up the soil, turns it over. If seed is put down, that sprouts along with any other seed that happens to be there, weeds and other wild plants. The new normal will be a plowed field where all sorts of innovations will spring forth. It will be a time of innovation, creativity […]

Snapshots. That’s what we have of the United States as we emerge tentative and fraught from lockdown. We don’t have the whole picture, just snapshots of this and that. Some of the snapshots are encouraging: The air is clearer, crime is down and a collective spirit is apparent in many places. Others are more disturbing: […]

A study envisioning how societies might address the complexities of the COVID-19 pandemic, undertaken by more than 70 leaders in innovation from around the world, is out. It is the largest, nongovernmental study on the virus, and it paints a picture of a world recalibrated by it — with a heavy dependence on data in […]